What support is available for me if I care for someone with dementia?

When you’re caring for someone else, it’s easy to overlook your own needs. But looking after your health and making time for yourself can help you feel better and cope better with your caring role.

Caring for someone with dementia may lead to feelings of guilt, sadness, confusion or anger. Unlike with other conditions, it can be difficult to share these feelings with someone with dementia, leaving you feeling very isolated.

It’s important to acknowledge these feelings, and there’s no right or wrong way to feel. If you’re feeling anxious, depressed or struggling to cope stressed, talk to your GP who can let you know about help and support available to you.

Carer's groups

Carers’ groups can be a good way to get support from other carers who understand what you’re going through and can share their own experiences. Most groups meet regularly and may offer speakers, leisure activities, trips and simply time to sit and chat.

Ask your dementia adviser or social services about local groups or contact the following:

Memory cafes

Memory cafes also offer information and support in an informal setting where people with dementia and their carers can attend together. There are often professional carers available to talk to in confidence.

To find out about local memory cafes, ask your dementia adviser, local Age UK or Alzheimer's Society.

Day centres

Some carers feel mixed emotions about day centres, but a variation in routine can benefit you both and allow you to have some time to yourself. There are some specialist dementia day care centres, while others may cater for people with mild dementia.

Day care can be difficult at first for the person with dementia to get used to. Talk to the staff if they seem upset or unhappy about going. Different day centres offer different activities and environments – you may find the person’s social and cultural needs are better met by a different one.

How do I manage financial and legal issues?

Making decisions for their future while they still have mental capacity can help someone with dementia remain in control and feel more confident. It can also help you, as a carer, to feel reassured that plans are in place for the future.

Managing money

If the person with dementia is still able to manage basic finances, they may wish to set up direct debits to pay regular household bills. If they prefer not to do this, contact their fuel companies to let them know the person has dementia and give them an alternative contact number so the person isn’t suddenly cut off if they forget to pay their bills.

If the person with dementia handled all the money matters for the household you may be finding it daunting to deal with all the finances for the first time. Start by finding all the important documents, such as bank statements, insurance policies, wills and pension details, and putting them in a safe place. Age UK Lifebook can help you get organised. Call 0345 685 1061 for a copy.

The person with dementia could also set up a third-party mandate to give you permission to manage their bank account on their behalf.

Planning for the future

Encourage the person with dementia to set up a Lasting Power of Attorney (LPA) so that a responsible person can make decisions on their behalf when they are no longer able to.

Talk to the person with dementia about making an advance decision to refuse certain types of medical treatment in certain situations. It will only be used when the person with dementia has lost the capacity to make or communicate the decision in the future.

If the person you’re caring for has already lost the ability to make or communicate decisions but doesn’t have an LPA, you can apply to the Court of Protection who can make decisions on behalf of that person or appoint someone else (a deputy) to do so.

If the person you care for drives, the law requires them to tell DVLA about their diagnosis. A diagnosis of dementia doesn't automatically mean someone has to stop driving straight away - what matters is that they can drive safely. Talking to the person you care for about stopping driving can be very sensitive.

How can I support someone as their dementia progresses?

In the later-stages of dementia the person may become increasingly dependent on others for their care.

They may have severe memory loss at this stage and fail to recognise those close to them. They may lose weight (especially if chewing and swallowing are difficult), lose their ability to walk, become incontinent, and behave in unusual ways.

Not everyone will show all these signs, and some people may show them earlier on in the illness.

Going into hospital

If the person you care for has to be admitted to hospital, this can be disorientating for them.

You can help by asking for the named nurse who is responsible for co-ordinating the person’s care as an inpatient. Tell them and other staff that the person has dementia and ask to be kept informed and involved in decision making.

It can help to write down important facts about the person and give them to the named nurse. For example, it can be useful to include details of how the person prefers to be addressed, their likes and dislikes, such as whether they prefer a bath or a shower, and the practical help they need.

Alzheimer’s Society have a leaflet called This is me which gives you space to write about the person’s hobbies and interests, things that may upset them, their personal care and mobility, sleep patterns and other relevant information.

Moving to a care home

If the person’s needs become too great for you to manage at home, you may need to consider other long-term options. If you’re becoming exhausted or the person with dementia is becoming harder to care for, a care home can be the best option for you both.

A move to a care home can be a difficult decision, but there are limits to the care you can provide.

If the person you care for is moving into a care home, familiar furniture, belongings or music can help them feel more settled.

End of life care

People often experience a gradual, long-term decline in their condition, so it can be difficult to clearly recognise when they are approaching the end of their life.

The best thing you can do is to ensure that their GP, medical staff and any care home staff know what plans they have put in place about their future care.

And if you’re caring for the person with dementia at home, make sure you speak to your GP about local services available to help you as their condition deteriorates.

When someone develops dementia, you may experience feelings of grief and bereavement as the illness progresses. When they die you may find that you have already grieved so much that you have no strong emotions, or you may feel overwhelmed by the loss. Whatever you’re feeling is quite normal.

How to communicate

As dementia progresses it affects people’s ability to express themselves so you may need to learn new ways to understand and communicate with them.

If what the person is saying doesn’t seem to make sense, try to look for the meaning behind the words.

Speak slowly and clearly, using simple language and short sentences.

Avoid choice and keep things simple with questions that only need a ‘yes’ or ‘no’ answer.

Avoid testing the person’s memory by asking them what they did earlier. Try not to get into argument about what they say, even if you think they’re mistaken. Simply listening to what they’re saying rather than correcting them can help someone feel acknowledged.

Create a memory book to help the person with dementia remember special times. This can be a collection of photos that represent happy events like weddings, holidays and the birth of children.

Memory books can also help health and social care professionals appreciate the person’s likes and understand their past experiences.

If you’re struggling with unusual or challenging behaviour speak to the person’s GP to get a referral to your community mental health team. The Alzheimer Society’s factsheet Dealing with aggressive behaviour has useful information including how to react, working out triggers, and dealing with your own feelings.

Distress and confusion may be caused by other health needs, rather than dementia. Always discuss any concerns with the GP so they can check for physical causes or reactions to current medication.

Check the person’s glasses are clean and their hearing aid is working if they use them.